英国国家医疗服务体系（NHS）在许多地区未能履行法律义务，为希望在家中去世的重症儿童提供必要的居家终期护理服务。1调查显示，在42个综合护理委员会中，36%未委托此类服务，31%能证明已提供了这些服务，24%仅提供部分应有的护理，7%表示仍在组织此类护理。1许多家庭因此被迫在医院而非家中度过孩子的最后时光。1
英国约有89000名患有生命限制性疾病的19岁以下儿童，每年约1600名患此类疾病的儿童死亡。1自2003-04年以来，患此类疾病的儿童数量增加了近三倍。1根据《2022年卫生和护理法》，综合护理委员会在法律上有义务确保24小时居家护理。1
慈善组织Together for Short Lives的首席执行官Nick Carroll将这一局面称为"令人震惊的"和"残忍的"。1母亲撒拉·布坎·库克的经历进一步凸显了这一问题的严重性——她的儿子迪伦患有桑德霍夫病，在2023年1月去世，享年快4岁。1
A significant gap in NHS provision is preventing terminally ill children from dying at home as families wish, according to an investigation by the Guardian World. Of 42 integrated care boards across England, 36 percent have not commissioned home-based end-of-life care services, while only 31 percent can demonstrate that they are providing such services.1 This shortfall means many families are forced to spend their child's final days in hospital rather than at home.
The scale of the issue reflects the growing population of children with life-limiting conditions. Nearly 89,000 children under 19 in the UK currently live with such diseases, with approximately 1,600 deaths annually from these conditions.1 Since 2003-04, the number of children with life-limiting illnesses has nearly tripled.1 Despite these figures, integrated care boards have failed to meet their obligations: a quarter of boards provide only partial care, while 7 percent are still organizing services.1 Under the Health and Care Act 2022, integrated care boards are legally required to ensure 24-hour home-based care.1
Nick Carroll, chief executive of Together for Short Lives, characterized the situation as "shocking" and "cruel".1 The impact on families is acute, as illustrated by the case of Dylan, who died in January 2023 at nearly four years old from Sandhoff disease; his mother, Sarah Buchan Cooke, was unable to have him cared for at home during his final period.1
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